Friday, March 14, 2008

No Comment...Please!!

Ok, I need to vent once again. I want to go out in public just once without someone stopping me to say,"Wow, he's got really white hair, huh?" One of these days I'm going to lose it and make a snotty remark back.....the possibilities are endless. But honestly, can't people just think these things inside their heads and keep walking?

The other day I saw a little girl with an enormous amount of curly hair - you could spot her from a mile away. I noted it silently, smiled and passed by. I did not feel the need to stop the family in the middle of what they were doing and point out the obvious.

I shouldn't complain, though, because at least these people are not as bad as the ones who stop and have a thirty minute conversation with me about it. I do want to educate people and give them real information about the condition rather than have them whispering behind our backs, but there are appropriate times for that conversation. Interrupting us as we're trying to eat lunch in a restaurant or stopping me while I'm trying to walk around an extremely restless toddler are NOT appropriate moments! I can't count how many times I've been literally wrestling with a squealing, writhing Emerson while someone yacks on and on about their neighbor's cousin's bestfriend who had blond hair and wore glasses because maybe THEY had albinism too and just didn't know it. I don't know either and frankly I don't care!

So I guess what I'm saying is that if you see someone who looks unusual, please resist the urge to comment unless you are 1) able to offer them real information or advice because you know about it firsthand or 2 ) trapped in an elevator with them for hours and honestly need to make small talk.

If you're wondering what all those pithy comments are that I should be saying but don't (yet), here is a great article from Lyra's mom:
http://www.parentofachildwithalbinism.com/2007/08/07/laugh-it-off/

Wednesday, March 5, 2008

Emerson's 1st Dog Food

Emerson has always been obsessed with the dog bowl. He has a thing for dishes in general (who doesn't appreciate good Corningware?) but the dog bowl is particularly attractive because it's shaped and painted like a giant dog's head.

I've learned to put it away as soon as the dog finishes her food, but this morning I gave her breakfast and turned around to grab something. In mere seconds, Emerson booked it across the room, pushed the dog to the side, and put some pieces in mouth. When I turned back, he had brown drool coming out of his mouth and the dog was looking at me like, "What the hell?!"

I had to hold him back, kicking and screaming, while she finished the rest of the meal. She kept pausing to come over and check on him because I think she was afraid that suddenly the kid had taken over yet another aspect of her life and she was going to get in trouble if she kept eating "his" food. I kept reassuring her that she could go eat, and finally the saga came to an end. Now Emerson's got the taste for salmon-flavored dog food...yum!

Monday, March 3, 2008

Bye Bye Mullet

Unfortunately, I seemed to have passed on my thin, fine, curly hair to Emerson. As his hair grew into the inevitable "baby mullet," my dreams of the long-haired hippie child disappeared - I wanted a clean-cut kid and I wanted him now! It's not that the long, angelic-like white curls weren't adorable, it's just that they only stayed that way for about 5 minutes after brushing them. It takes very little perspiration combined with a winter's hat to create a fuzzy rat's nest when you have hair like ours.

Besides, I was afraid if I let it keep growing, he might someday soon look like this kid:


So, I begged and argued with Robbie and eventually wore him down. And thus we went for our first major haircut at a salon (my mom did the first trim, but she is back in Utah...and Robbie can attest for the fact that blades and hair are not a good combo for me). Emerson did surprisingly well and in no time my black sweater was covered in a white haze. I was so amazed by how well it went I bundled us back up and walked out the door without even paying! Luckily, they didn't notice until I came stumbling back in the door an hour later, apologizing profusely.

The end result was not all that unique, but at least clean cut:

Thursday, February 14, 2008

Introducing Mean Mommy

We survived January. For those of you who might not know, I have to spend the entire month of January every year in Chicago for intensive classes. I had been working my stomach into knots over this for months because this time Emerson stayed home. It was just too much to ask my parents or Robbie to entertain a one-year-old in a studio apartment for 4 weeks.

I stressed about weaning him in time (especially when one of my psychology textbooks casually mentioned that improper weaning could be the most traumatic experience of a person's life - no pressure there), I worried about how he would react being away from me that long, and I worried about how we could accomplish all the things we needed to work on with him (teaching him to walk, getting him in the crib at night, getting him to wear his glasses, etc.). And of course because I stressed so much, everything went perfectly.

Weaning happened over Christmas break in Utah - we just kept passing him around and my family took turns giving him a bottle. The boy who was nursing 30x a day went completely to bottles in 2 weeks without even realizing it! When we got back to Michigan, we had one day to unpack, clean and repack before heading off to Chicago as a family. Robbie and Emerson spent the first four days with me and then took the bus back to Michigan. As I watched them pulling away and saw Emerson's tiny hand pressed up against the window, my heart broke. I cried as I waved goodbye, I cried when Robbie's text message telling me everything would be great popped up a few minutes later, I cried during the cab ride all the way back to school. Luckily I chose a cab that was playing mournful jazz on the radio and the view was the lonely lakeshore against a blue-black sky - it matched my mood perfectly.

After a couple of days, the sadness lessened and I was able to enjoy being a full-time student in Hyde Park. It was so nice to be around my like-minded classmates, to have endless intense adult discussions (no patty cake here), and most of all, be able to focus on only one thing at a time! I had also been looking forward to a whole month of good sleep without Emerson around, but my apartment building conspired against me. Between the traffic outside and neighbors who indulged in "relations" on a creaky bed at all hours of the night EVERY night, I was more sleep deprived than ever.

Of course, being in Hyde Park lent itself to many interesting encounters throughout the month. One of my favorites was when I was coming out of my aparment and a mentally disabled man was just coming in. We struck up a conversation and he told me he had lived in this building for over 10 years. Then he proceeded to pull out a small metal flute from his pocket and play a Christmas Carol. When he finished, he asked if anyone in my family took music lessons and I told him no- we thoroughly lacked musical talent. He said we should take lessons and always carry a small instrument with us "so you can bring music to people wherever you go."

Another encounter was at the local co-op grocery store that was closing down. Despite being several blocks away, I ventured over hoping that their close-out prices would be better than the mugging I was getting at the tiny markets by my apartment. It was an eerie feeling to shop in this large grocery store with only one or two random items scattered on the shelves. It was almost post-apocalyptic. As I was scavenging through the hearts of palms and canned herring to find worthy deals, I struck up a conversation with an elderly African-American woman. She told me that the co-op was closing because the university wanted to clear room for a big chain grocery store that would lure people from downtown to Hyde Park. She told me how this store had started as a small group of community members trying to help each other out. And she told me how she herself had struggled as a young mother until she was able to start a co-op with the people in her neighborhood. "You have to fight against the man," she said fiercely, and I agreed.

Meanwhile, back in Michigan Emerson and Robbie were living it up. Robbie told me smugly that being a stay-at-home parent was so easy, so I left him a "to-do" list to accomplish in all his "spare time." I wasn't suprised when I came home for a visit that weekend and discovered that NOTHING on that list was done. He and Emerson spent the entire week together sleeping in, watching tv, and going out with our work-at-home friend across the street. I suppose if I could live that way, staying at home would seem pretty fun too!

That same weekend my parents flew in to take over baby duty for the final two weeks. My mom is a compulsive cleaner, so she asked me to leave a list of household duties in addition to suggestions for fun things to do around town. The five of us ate out and did some fun shopping together for the first two days, but when I went back to school, my mom got down to business. She organized cupboards, sewed torn clothes, repaired odds and ends, salvaged our houseplants, got Emerson onto a schedule, got him sleeping in his crib, got him to use his walker without crying, slyly guilted Robbie into accomplishing the many little tasks he was putting off - in short, she and my father accomplished more in two weeks around my house than we had accomplished in a year. I was grateful and humbled to say the least.

After they left, we had one day of normalcy before we all got sick and my mother's perfect schedule and hard work with Emerson went out the door. Let me tell you, if there is a hell, it is getting sick as a whole family and being stuck indoors for 2 weeks with nothing to do but watch television during a writers' strike. I am still trying to get over a twisted addiction to "Make Me a Supermodel."

The worst part was that Emerson was barely sleeping unless we held him in our arms and he ate almost no solids. We eventually all got better, but he was still deeply entrenched in some bad, bad habits. Then I went to a playdate last week with a friend who has a little girl that is equally dramatic and stubborn. I realized that if she can get her daugher to eat and sleep, I can do it with Emerson. Thus "Mean Mommy" was born.

After one 45-minute long scream session that first night, Emerson settled back into crib life and even slept 6 full hours one night (halleuia!). We cut down on the formula and increased his solids to three full meals a day (the trick was to mix everything with his favorite food - hummus), we started making him wear his glasses again, and I put him back into a mostly regular routine. I never thought I would like that word - routine - but motherhood has broken me down.

And so Mean Mommy trudges on...basking in the small victories and praying that she doesn't traumatize the child for life.

Monday, February 4, 2008

Albinism in the Media

My friend Mashawna created yet another moving and educational slideshow. Please pass it along!


View this montage created at One True Media
Perception is Not Reality

Monday, December 24, 2007

What a Difference a Year Makes

Reason #45 why it sucks to have a birthday in December: Your birthday party can always get cancelled by a blizzard.

After suffering for years under the tyranny of a December birthday, I swore I would never, EVER have a baby in that month. And then there was Emerson....

This year we celebrated his big 1st birthday and we attempted to have a party for our Michigan clan on December 16. When we woke up that morning, however, we were greeted with 10-12 inches of blowing snow, a lot of unhappy phone calls to make, and a lot of extra food to eat before going out of town in only three days. I was disappointed after the work and money we put into pulling the party together, but at least Emerson didn't know the difference. We ended up spending the day visiting with friends who lived close by, eating cake, and then watching all the video we had made of Emerson throughout the past year - from the birth (it still makes me wince) to his first bites of solid food.

The video was bittersweet in many ways. It was fun to see him grow and change and do his adorable baby things, but it also brought back memories of how painful and frightening those first few months were. Although we still have struggles - the occassional rude stranger staring at us or our frustration as we try to get him caught up on milestones - but the worst of it is definitely over. In fact, we hardly even think about his vision any more! He is making eye contact, inspecting everything in sight, and generally acting like a normal (albeit extremely goofy) baby. I know his vision will become an issue again when he starts walking, but for now things are pretty darn good.

The most important thing is that Emerson gave me the only birthday present I asked for....he learned to crawl on all fours!!!! He started practicing on the 16th in front of our friends, but then took definitive steps forward the next day. When I saw him do it across the room, I danced around the room with him singing a triumphant "Hail to the Chief!" Now we can start working on walking. he he he

Anyway, we are in Utah now visiting family for the holidays. Emerson got a chance to have his own birthday party at last (it was technically a joint party for me, my sister and Emerson, but we all knew who the real star of the show was). Grandma went all out on the food and decorations as always, including getting a nice big cake for Emerson. He was a little scared of it and unfortunately refused to dig in, but he was more than happy to eat it off my fingers.

This time of year is always filled with birthdays and holidays for our family, but it also tends to be the time of year when emotional events happen. I won't regale you with the whole list, but suffice it to say that the past three have been particularly emotional.

Right before my birthday two years ago, we found out that our first pregnancy was ending in miscarriage. On Christmas Eve a week later, I had just undergone surgery due to the miscarriage and we were in Utah for our annual visit. My parents always work on Christmas Eve, so Robbie and I drove to our old church downtown for the midnight service. Before we even got there, the pain killers had worn off and I was doubled up in agony. We were meeting some friends there, so I told Robbie to go ahead while I tried to pull myself together in the bathroom. I ended up spending most of the time in the cold, tiled room listening to the service over the speakers. I did my best to imagine the beautiful, candle-filled sanctuary as the congregation sang carols and the velvet-voiced minister gave his holiday homily. Then he talked about how Christmas can bring up painful memories as well as happy ones. He ended by asking people to come up and light a candle for all those loved ones they had lost this year, so I imagined Robbie lighting a candle for our baby.

When we got into the car to go home afterward, I asked Robbie if he lit a candle and he said yes. I cried all the way home.

A year later during my birthday, I was in the midst of labor and wondering if I would ever meet this baby. When he was born early the next morning, the significance of the timing wasn't lost on me. We were all so, so grateful to finally have our baby. A few days later, we attended the Christmas Eve service in our home church. The minister stopped his homily to hold up the newborn Emerson for the whole congregation to see, but he slept peacefully and was completely oblivious to the "oohhs" and "aahhhs." When we sang "Silent Night," I looked down at him and cried.

This year during my birthday, I watched a much bigger Emerson try out his new crawling skills and jibber jabber away. A year ago it didn't seem real that I had a son, but even after all this time it still hasn't sunk in! Now it's Christmas Eve again and a thick blanket of snow has prevented us from going to midnight service. Instead, my baby is fast asleep in the next room and I am here getting all sentimental.

It's exciting and a little scary to think where we'll be this time next year and all the changes in store for us. But for now, I'm just grateful for how far we've come.

Thursday, December 6, 2007

What happened to November?!!!

Ok, once again I apologize for letting time get away from me and for the lack of pictures. One of the reasons for the long hiatus was MORE computer problems, which also prevented us from doing much picture work lately (strangely, our computer was plagued by viruses soon after installing our new anti-virus software. Coincidence?) Anywho, here's my attempt at catch up and I promise more fun pictures and attempting-to-be-meaningful essays will come after I finish out the school semester.

The month of November started with my maternal grandmother passing away in Utah. She was 92 (would have been 93 today) and had health problems, so it wasn't unexpected....but still, she was one of those people you think will live forever. We had some wonderful memories together, so I was glad to have a chance to fly back there and speak at her funeral. Although it wasn't the greatest circumstances, I was ecstatic to see my family for a week and let them get some intense Emerson time.

More than anything, it was helpful for me to see how my family interacted with him and get some parenting tips from the pros. It's not that I don't have seasoned parents living around me here in Michigan, it's just that when I stay with my family in Utah, they get to see Emerson around the clock. For instance, my mom took control of the whole not-eating-solids situation right away. Using an expert blend of "distract with one hand and shovel it in with the other" techniques, she was able to get amazing amounts of food down him with no tears. In other words, an actual meal!

My mother, bless her, also took Emerson for a couple nights so I could get my first and only good night's rest in over 10 months! The only bad part was that I was so used to waking up constantly, I still woke myself up throughout the night out of habit. But at least each time I work up I could savor that intensely satisfying feeling of going back to sleep, stretched out on a bed I finally had all to myself. Oh, my cramped arms and legs ache just thinking about it....

One of the best parts about our trip was that it flipped a switch in Emerson and all of a sudden he took an intense interest in everything. He has been army crawling for a while now, but hasn't felt the need to explore much beyond getting from one toy to another. But in Utah he was inspecting the pattern of the couches, creeping over to stroke the plant, studying the lines of the wallpaper. When we got home, this new curiosity continued and he is now ALL over the house. (I've started calling him "my little professor" because when he's interested in something, he uses that little pointer finger to poke and prod while he stares at it with this intense, thoughtful look on his face.)

I know this stage causes a lot of headaches for most parents, but since he's behind in milestones, I'm ecstatic to have to keep a close eye on him as he takes off exploring. I actually find myself happy about the fact that he's figuring out how to open cupboards, attempting to stick his fingers in outlets (don't worry, they're covered), pulling dirt out of the potted plants, etc. He's also become obsessed with pulling himself up on everything. It still catches me off guard every time I turn my head for a second and then turn back to see him standing there with a little smirk on his face.

Anyway, after the excitement of the trip wore off, Emerson and I both came down with colds. They started out very minor, just a little ache here or a runny nose there. We were still able to spend Thanksgiving making the rounds with family, eating the most amazing gourmet dinner, and watching Emerson trick people into taking his hands and walking him all over the house (it's a complicated technique, but effective).

But by Friday were both officially sick and miserable. Emerson's never had anything beyond a minor stuffy nose, so seeing him get a fever and become a whining mess was the worst experience. I was also losing my voice just in time to deliver the sermon on Sunday, but luckily Robbie helped me recover it just in time.

Emerson did well during both services and - despite some technical hitches at first - my sermons went well. In fact, we had an amazing experience during the second service after a section on Native American oppression. I was just about to move on to the next topic when one of the congregants yelled out to me that a fox had emerged out of the woods behind our church. We all clustered by the side windows to watch this incredible animal walk toward the sanctuary, then stop and curl up in a ball in the sun while still watching us watching him. I was able to continue the service and incorporate the sighting into my sermon, and the fox continued staring at us as if he were listening intently. The simple gifts of life....

Unfortunately, with all the excitement of the day, Emerson and were going downhill again by the time we got home. He just wanted to nurse or sleep non-stop and we couldn't put him down for even a second. It became exhausting, literally draining for me, and heartbreaking. By Tuesday we finally got him into the doctor and discovered he had his first-ever ear infection! We felt horrible for not suspecting or doing something about it sooner, but he hadn't been pulling at his ears or crying like most babies.

The good news is, the doctor gave him a treatment plan to help him feel better quickly. The bad news is, the non-stop nursing and coddling have undone MONTHS of hard work that only recently got him to the point where we could put him down and he would usually go to sleep by himself, was only getting up twice a night for feedings, and was able to eat at least one meal of solids a day. Now we are back to square one again...heck, we are probably a few steps behind square one. Oi vay.

At least we have his personality back again. And what a personality it is! This child knows all about dramatics and how to use them get what he wants when he wants. He is also stubborn as hell, but I'll save that for an upcoming blog. The other day, I told Robbie as I was struggling with Emerson, "I've never wanted to strangle someone and kiss them at the same time...except with you of course."

And that's just it...he looks and acts just like his father. He goes around with this smirk on his face most of the time like he's up to something or he'll just sit there and laugh to himself with these deep chuckles. A couple of weeks ago, for instance, Robbie was holding him when he started to cry for me. As I held out my arms to take him, his tear-stained face immediately went from agony to his little smirk - as if to say, "suck-ah!!" The child is already a smart-ass and can't even talk!

I could go on about his antics, but since this post is already long and I'm starting to feel like Kathy Lee Gifford telling Cody stories, I'll stop here for now. December is already speeding by too fast and we've been plunged head-first into the holiday season and end of the semester. Not to mention my baby is turning one in less than two weeks! But I promise we'll post more soon.

In the meantime, Happy Holidays to all and to all a stiff drink.